Letting my traumas speak, so they might be silenced.

need

I’m busy printing out proofs to attain a payday loan. It is a long shot, last resort sort of move on my part. There aren’t any options left beyond a ridiculous interest rate over 50% and steep penalties should I not meet the strict requirements of repayment of that criminal amount of interest. It should be a crime for such life crushing loans to exist. And yet I am working to get one, and desperate to hear them approve me for this loan that I believe to be criminal.

It is nonsense, really. But it makes all the sense when you live in the margins, where there is never enough, and you are treated with contempt and barely considered human, much less treated with the grace and kindness and compassion that humanity should garner.

These days, I don’t know what “humane” means. I don’t know that “humanity” exists in the way it once did. Or, more correctly, I don’t know that it exists in the way that I had imagined.

I was running very late for a doctor appointment the other day and needed to take a Lyft instead of a bus. My driver, a Somali native, said something along the lines of “selfishness is human nature”. I wanted to argue that was not true. I wanted to express the compassion and love that humans were capable of offering one another. And then I thought better of it, knowing that I was suffering needlessly an economic situation that could be eliminated with just a few dollars from the people who call me “friend”, and knowing that this man, having emigrated from Somalia, knew selfishness and pain and racism and judgment and xenophobia and messed up fucking shit that I, an already despairing woman, cannot even imagine. Who was I to tell him that humanity has something better to offer??

Instead, I made a statement about perspective and how much we are shaped by what we experience in our lives—hoping to avoid agreement that hurting those whom we can place beneath us so that we might rise is human nature, but also not arguing that we are better than that, because I don’t feel like we are better than that very often of late.

I sit at a desk covered in images of Wonder Woman. I built it. I covered it in these images deliberately, because I found it inspiring. Not only do I sit and work atop a work of art when I am well enough to do work, but I also have a deep sense of justice and love and giving of myself to improve the state of the world, and she embodies that for me, and reminds me that my end goal is a world filled with love and justice. What I do at this desk should be focused on that goal. And to a great extent my work is focused on that goal.

But more and more my focus is fear. There is worry over finances. There is stress over what I read in the news. There is the sadness and the horror that comes from seeing the world become more broken, fractured, confused, and afraid as a particular world leader creates xenophobia, insecurity, unrest, racism, and general hatred and chaos. There is pain and struggle and the fear that the future will become even more difficult than the present. And that isn’t just my personal fear, but the fear of millions, which is even more heartbreaking, because of my deep empathy. Wonder Woman and her ideals seem worlds away while I work atop images of her from generations of comics.

I wonder if Donald Trump ever watches super hero films or reads comics. Do you suppose he sees himself as the hero or the villain? He certainly doesn’t have the ideals of the hero, so he must be delusional if he identifies as one.

I know that I am not the hero in any story. I sometimes get painted as one. Ask my brother-in-law about Christmas Day in Seattle and he will tell you a tale that makes me the hero of the story. But I am not the hero, because I only did what any human should do—I helped a woman in need. I felt her pain, I met her in it, and I made certain that she was safe in the hands of professional medical personnel before I left to attend to my own needs. That is the least that we should be doing for one another. The absolute least.

There is so much more.

So. Much. More.

Recently, I had dinner with my “brother”, Adam. We were talking about need and giving and enough and excess. He talked about aid that he had offered our nephew, and the way that he had added a component of “paying forward” part of the funding that had been offered to him. Give to another, the way Adam gave unto you.

It sounds a bit biblical, right?

It is a bit biblical. Because there is a verse in the bible that is pretty much the same. It is found in the Gospel of John, Chapter 13, verses 34 and 35. It says, “I give you a new commandment: Love one another. As I have loved you, so you also should love one another. This is how all will know that you are my disciples, if you have love for one another.”

I suppose that means if my nephew pays forward a third of his college aid, he is a disciple of my “brother”. Haha. There are definitely worse men to be disciples of, so this is probably a good thing.

The point I am working toward here is that the goal that we as humans are meant to be working toward—according to Jesus, and according to Adam, and according to Wonder Woman, and according to the feeling in my gut—is offering love and compassion and physical needs and grace and equality and honesty and kindness and more than enough. And I don’t know when or where we lost sight of that, or whether we ever truly had that in our sights as a society at large. But our heroes—the embodiments of the best of us—have always had that in view. We need to cling to that view.

I should be focused on what I can do to continue living out the ideals of Wonder Woman, not on what I need to desperately print out to prove that I am worthy of a criminal payday loan! No human being should be forced to sell their soul so Speedy Cash out of fear that they won’t live from the 28th to the 1st, and will lose their home, contact with their family and friends, and the ability to obtain sufficient calories to sustain their body. And when some of the people are in this state while others are jumping off of fancy boats in the waves on a weekday morning, we are not loving one another as we have been loved. We are not giving to one another as Uncle Adam gave to us. We are being selfish. And we are letting Somali men believe that this is just the way we are as humans—that this is just who we are and will always be: selfish bastards who trample one another to elevate ourselves.

Are you a selfish bastard who tramples others to elevate yourself? Is that who you want to be? Is that what you want to be known for and what you want others to believe defines the human condition?

I cannot abide that. I cannot tolerate that. I cannot accept that.

I won’t let humanity be a giant game of “king of the mountain” where the ruthless climber is the winner. Not if I can do anything to help it.

And I can do something to help it. You can also do something to help!

We can all stop accepting the idea that selfishness is a part of our DNA and refuse to let humanity be defined by anything but the heroic ideals of love and generosity and compassion and care and grace and good. We get to define who we are, as individuals, as a society, and as representatives of the human condition. We decide.

So, decide now. Are you the kind of person who lets payday loans take the souls of disabled, poor women struggling to make ends meet, or are you the kind of person who changes the narrative and refuses to let this be the way that we treat the people in the margins? Are you the kind of person who is ready to stand up and work hard to eliminate the margins?

It will be difficult work. Change always is difficult. You need to learn, you need to change the voices in your head, you need to assess the things that you believe and challenge the beliefs that you have held for many years. So much of our bias is unconscious, and it takes a lot of self-reflection to work out what we think, and then to consider the ways that thinking might be incomplete, inconsiderate, or just plain wrong. But if the choice is between doing hard work or letting down humanity, I choose hard work every single time.

Today, I still need the payday loan. And it breaks my heart to know that I need to sacrifice in this way. It is a terrible choice. But there aren’t good choices in the margins very often, unfortunately. Maybe at some point I will have better options, or there won’t be margins, and humanity will not be seen as selfish, but as loving and generous and compassionate. Maybe on that day payday loans won’t exist—they actually will be criminal, as in illegal—and disabled women will not be afraid of starving or living under bridges because of financial challenges. If enough of us choose care over selfishness, this will be reality.

So, choose heroic ideals instead of payday loans. Don’t let Somalian Lyft drivers believe that this is who we are as humans. Don’t be this as humans.

We can do better.

I know that we can do better.

Follow Jesus, or Wonder Woman, or Adam. Choose heroism over selfishness and do better.

There has been so much to say that I haven’t been able to say anything.

It’s one of those things that seems inevitable for me. The more there is, the less I do. I have heard others speak of this phenomenon. I’m, apparently, not the only one who suffers this problem. And I have read a bit about how decision-making gets more difficult with each decision, so having too many things to decide leads to a sort of fatigue or paralysis for your will.

I think I currently have some fatigue or paralysis of productivity, because there is just too much I feel like I must produce—or do, in other terms.

I have this long list of things that I am working on completing … so I spend no time completing tasks and all the time bingeing on The Mysteries of Laura and The Killing on Netflix. The sheer volume of tasks makes me unable to choose a task. I am overwhelmed before I even start.

There is this thing that they call “uniform dressing”. It is basically taking the school uniform into adulthood, and removing wardrobe decisions from taking up your precious decision-making energy. Steve Jobs, Barack Obama, and Vera Wang all practice(d) this way of dressing. When you think about it, they wear the same thing all the time—not the actual same clothing, but the same basic type of outfit. Vera Wang wears a legging for her everyday, and Steve Jobs used to be in a black turtleneck at almost all times. Obama has a white button down and a grey pant for every occasion—dress it up or dress it down, he is always wearing the same thing.

I’ve been thinking about trying the uniform dressing out with my own closet. I don’t know about everyone else, but I stand in front of that damned closet for way too long. And it doesn’t matter where I am headed or what I need to do that day. I spend twelve minutes in front of the closet even when I am choosing joggers and a tee for a reclusive day in my apartment. And that time staring at my clothes or trying on and taking off items increases in direct relation to the amount of “fancy” associated with the event.

The concept of uniform dressing seems like a good one, in terms of reducing time spent considering clothes. What I wish for is a similar concept for the rest of the tasks in my life. How does one “uniform clean” or “uniform pay bills” or “uniform consider the state of the union and freak the fuck out”? How do all those decisions and determinations and actions become rote and leave my brain less fatigued and less paralyzed?

I’m not sure there is an answer to those questions. They are mostly rhetorical—unless someone reading this has a solution, in which case, please share your wisdom!

So, yes, there has just been so much to write and so much to think about and so much to plan for and so much to accomplish that I have been stuck not writing and not thinking and not planning and not accomplishing. I’ve been in this sort of non-being—walking around and appearing to be handling life, but being completely stymied by all the things inside my head.

And being overwhelmed is not new to me, sadly. But this is different, because every aspect of life seems overwhelming, not just one or two.

I have worries about all the parts of my existence, because the world has changed in significant ways over the past few months, and my view of the world has changed in significant ways over the past few months. I’ve had all sorts of experiences where what I thought was true, turned out to be false. I thought that people were reasonable. I thought that Spring brought security. I thought that my worst fears were never to be realized. I thought that life had a certain level of sense attached to it, and that nonsense couldn’t become normative.

I was wrong.

And the world that I have been cast into, by my realizations, isn’t the whimsical Wonderland that Alice gets to explore, but the opposite. There is no whimsy here. There isn’t joy here. There isn’t hope here. The only thing that my world shares with Alice’s world is the irrationality—the senseless replacing the reasonable.

And the chaos is too much.

I have degrees in philosophy, religion, and social justice. I understand well the ways that thought and belief and social problems shift and form and reform throughout history. But I have never experienced a time when that shift happened with such force and velocity that I could see the change happening—feel the pendulum swing.

That force and velocity made the pendulum swing right into my gut, and throw me flailing across the room, proverbially speaking.

The worst of that flailing was in response to the emotional connection I made with the change in thought that I was experiencing. The knowledge that people whom I have connected with, stood with, and related with believed in and supported this swing of the pendulum was painful. It still is. Those who would claim to love me, on one hand, promote ideals that would kill me, on the other. And the cognitive dissonance isn’t the thing that bothers me most. The thing that bothers me most is the knowledge that I am the Other. When it comes down to the nitty-gritty truths of the matter, I am not the person who “deserves” care and kindness and assistance and love and life. I am the expendable “drain” on society. I am the margin. I am the fringe. I am the problem, and the solution to fixing me is denying me basic rights and basic needs—effectively exterminating me. Let’s all hope and pray that the literal extermination of people doesn’t become normative. But we also need to be honest about the fact that denying anyone basic rights and basic needs casts a death sentence upon them. And I feel like many in my nation are not being honest about that.

Paint the world with your fascism, if you must. But don’t pretend that you have painted it with hope and love. Admit that you have painted fascism. Admit that you are making my life a challenge. Admit that your actions are placing so much undue stress upon my brain that it cannot function normally—being paralyzed and fatigued by the hopelessness and fear that weights the synapses, slowing them to a crawl. Admit that you have painted a picture that doesn’t include me, or at least puts me in the dirty, decrepit corner where the others cast out the “problems” they don’t wish to acknowledge or deal with.

And now all the Trump voters are freaking the fuck out because they believe this is a political post. It is only partly such, because making the presidency a reality show cannot be ignored as a part of the dilemma. But, it is mostly just me looking at what is happening in the world right now, and acknowledging that I no longer have a place in it, in the view of many. I don’t deserve a space on the board when we are playing this game. I’m continually told to not pass go and not collect $200. I’m stuck in a world where nonsense is sense and reason is replaced with weird tweets and executive orders that can only serve a handful of people.

(Wait. Are we literally in a game of Monopoly right now? That would explain so much. I fucking hate that game.)

So, here it is: a post with no wise expressions and no neatly packaged solutions, but just the admission that I am overwhelmed and that I don’t know how to fix that. I don’t even know how to begin to fix that. This post ends in the same place it begins. It ends with me paralyzed and fatigued in ways that make me completely ineffective and incompetent. It ends with the pain of betrayal, and the questions about how and why my experience is invalidated and ignored. It ends with me having too much to say and too much to do and too much to fix and too much to think about. It ends with a plea to be heard falling on deaf ears.

As I was printing out boarding passes this morning (the beautiful gift from my sister that means I can spend the holiday with family), I was listening to some holiday music. The Little Drummer Boy carol caught my attention, and I wondered how many times over the years that same carol has caught my attention.

I have no gift to bring; to lay before a king…

This sometimes feels like the story of my life. And I would welcome you to the story of my life, but you probably don’t have a ton of experience that would help you relate, and I definitely do not want you to gain a ton of experience that would help you relate.

There have always been reasons—totally valid and important reasons—for my inability to afford the gifts that most in North American society consider requisite around the holidays. And while gifting and giving look really different in different households, there is usually a component of the holiday season that involves offering gifts.

Obviously, the first reason for not giving gifts is childhood. Kids don’t have money, and when they do have money they usually spend it on stupid shit, like cotton candy or collector cards or fluffy pens. So, as a child, giving was done on my behalf by my parents. And while my parents were not “well off” and very far from wealthy, they saved and budgeted in ways that allowed at least a bit of gifting.

After you transition from childhood to adolescence or adulthood, other people stop adding your name to their gifts for others. And while some of us are blessed with good jobs and parent-provided college tuition, leaving us cash for gifting in this season of life, I was not. I had the opposite, in a way. It wasn’t that my parents were not supportive. They were supportive. But I was not just transitioning from childhood to adolescence or adulthood. I was on a downward spiral to total meltdown at the rock bottom. I was tortured by challenges that most need not face, and this transition meant something intense and painful and confusing and hard. I didn’t have resources to offer gifts to others.

I can say that I have always been a generous giver. The lack of resources didn’t always mean that I was balled up into a severe self-interest. I gave my heart. I gave my body. I gave my ideas. I gave my support and care. I gave in myriad ways, but not in ways that our society usually recognizes. Love isn’t considered a good gift, for some reason. Stuff you spent money on is somehow what defines giving in my society. Which is sad, because I truly believe that love is so much more valuable than even the most expensive and extravagant stuff.

The rock bottom that I spiraled toward left me in a difficult situation. A single parent, an addict, and a mentally ill but undiagnosed and untreated person, I was left with few resources to offer others. I poured my energy and my love into my daughter, into my education, and into my “dead end” jobs that left me still dependent on others to get by and pay for the basic necessities of life. I still gave my heart and my body and my ideas and my support and care. But I still felt insufficient due to my lack of having and my lack of giving in this monetary sense that Americans hold so dear.

I pulled my way out of the pit of despair time and again. Many times because a hand was outstretched to meet mine, and give me aid. Many times because I forced out the energy needed to climb out of desperation or out of hope—they both push you toward a goal, even though they are such different feelings. There were moments when there was finally “enough”, and I gave thoughtful gifts to my family members and friends. There were moments when I was unrolling the toilet tissue from a public toilet onto an empty cardboard roll and putting as much as I was able into my purse—stealing the most basic of items to survive.

Today I find myself in a position of need once more. And this threatens to be a position that I never get out of—a situation that cannot change. Disability and all sorts of vulnerability leave me without the resources that I need to survive. I’m not yet stealing toilet paper, but I am on the brink—the temptation to take what I need when others refuse to give it is strong on some days. So is the urge to drink too much or start smoking again. It is desperation that pushes me forward these days. And I am not in a position to give. I’m in yet another season of need.

And this gets us back to the start of this post—the little drummer boy.

He has no gift to bring. He has nothing of worth. He has no resources. But he places himself at the altar, packs his love and his talent and puts them under the Christmas tree—or maybe not at the tree, because Christians who would consider the nativity and a lighted tree in tandem didn’t exist during the nativity. Honestly, nobody considered the nativity on the “actual” nativity, and lighting trees was a pagan ritual that was adapted by people who began to believe in a nativity but missed partying on the solstice. Instead of giving up the party, they created their own reason for the party.

Pardon the tangent. But people really should research what they celebrate and why. It might be both scandalous and helpful, because it would help some see that people of different creeds are not really all that different, when it comes down to ritual and celebration and basic systems of belief.

So, the little drummer boy throws down with his little drummer talents. He smacks those bongos like nobody’s business. And all who hear him are pleased with his performance and it is deemed worthy.

I have lost a lot of my “talents” over the years. My voice doesn’t work, so I don’t sing with the beauty I once did. I’ve spent many years away from a piano, so that skill has slipped away from me. I can’t run or dance or throw myself into a role on a stage. I’m a good writer, and a good artist—maybe even exceptional in those fields—but with my physical and mental limitations due to illness, it can be very hard to complete pages and fill canvas. I can’t smack bongos like nobody’s business. I can’t even do the things that I am good at doing anymore.

I used to hear the carol about the little drummer and feel like I could relate. I had no resources from a financial standpoint, but I could still offer my talents, like that little boy who somehow ended up in a barn with his drum. I still found value in what I had to offer.

It gets more and more difficult to feel valuable. Ableism hits me hard at times, and I begin to see that challenges are stacked one atop the other, filling up all the space where the value I once placed upon my life and my self once rested. There isn’t as much room for feeling like I have something to offer. Even though I still have much to offer.

Love and care and support and kindness and equity and a voice and a vote and intention—all of these are things that I have to offer. I don’t need to have anything to place before the king.

I also don’t need to perform for the king.

The mistake that the little drummer boy makes is believing that he needs to offer a performance if he can’t offer stuff. He doesn’t consider that just being present is, in itself, a gift. He doesn’t consider that his existence alone has value. He thinks he needs to bring something monetary, and when he can’t manage that, he thinks he needs to bring some offering of talent. Why, I wonder, doesn’t he believe that he can just go over to the barn and hug the parents and hold the baby and offer his love as a gift?

Is it because we don’t think that love is a gift?

Love is a gift. Presence is a gift. Existence is a gift.

I don’t have extravagant gifts for my family and friends. I didn’t send out holiday cards, and I don’t have any packages wrapped and placed under the tree. But I am beginning to realize that I don’t need either the presents or the talents to have a valuable contribution to the holiday. I AM the valuable contribution. I AM a gift.

I’m not trying to say, “Look at me! I am awesome and you should want my presence as your gift!” I am attempting to convey that the value in this scenario is value inherent in personhood. Giving things is great. Sharing talents is great. But existing—being present—is the greatest.

Being present is the greatest gift that any of us can offer.

Yes, I want presents. Yes, I want donations to my fundraiser. Yes, I want contributions to my start-up that help me open a business. Yes, I want to hear beautiful songs and embrace the talents of others. But more than these, I simply want presence. I want to be there for others and have others be there with and for me. I want to share existence, and honor the gift of being.

I know that is a bit ethereal a concept, and it can be difficult to comprehend my meaning. In simplest terms, I want to be and let be. I want to live and let live.

And that, for me, means embracing that I am a gift to those around me. My open and accepting and loving and helpful and generous self is the only gift I need be concerned with giving.

Having money and resources is wonderful. I would love to have more money and more resources. But I don’t need more money and more resources to offer an amazing gift.

I’ve watched this progression happening inside my home over the past month or so. The container garden in my sun porch at some point brought little flying bugs into the environment. Whether they came from the soil or from the great outdoors is unclear, but they arrived, nonetheless. And I have tried several remedies that promise to remove the microcosmic infestation in the front window, to no avail.

But the progressive part is that as the population of the tiny insects increased, so did the incidence of spotting arachnids. Spiders. I hate them. I have an irrational fear of the spiders. I’m the Ron Weasley of the real world—freezing, crying, losing the ability to speak, and basically freaking out when a spider comes calling.

For the most part, the arachnids have been tiny, in correlation to the tiny bugs, I suppose. So, I am coping with relative sanity.

Next have come the “creepy bugs”. Someone once told me not to kill them, because they consume spiders, so they are apparently a friend to the arachnophobe. But they are no friend to me, because I consider them creepy. They look downright scary. They are some sort of centipede, I suppose, but they have legs jutting out the bottom en masse, and they have a symmetrical wealth of leg-like protrusions on the top of their bodies. I’m getting a shiver up my spine just imagining them for long enough to describe them.

I remember a time with my friends Nic and Adam had a snake in their second floor apartment. We lived in the same apartment complex, and when the snake showed up in their environment, I immediately jumped into anti-snake mode. That meant a concerted effort to trap and kill any and all mice or rats that could be present in or around my apartment. I’m not sure how you snake-proof a home, but the concern I addressed was the food supply for snakes, not the snakes themselves.

I never had a snake in my apartment. I did catch some mice. And the mice were present because some lady in another building on the complex had made it her personal mission to capture and send to shelters the cats that lived around the apartments. Had she left them be, the cats would be eating the mice, and the snakes wouldn’t move in because they would have no food supply and a potential predator in the cats.

So, as I watch this little cycle of life in my window sill, I think about where I sit on the food chain. And by this I do not mean that I am concerned with who or what might consider me meat. By this I mean, what threats and resources are affecting my life, and why.

I’m not high on the list as far as human hierarchy goes. I’m a disabled, impoverished, woman. So that is at least three strikes against me. I’m also white and educated, so I am offered some privilege. I suppose if we were to consider the hierarchy of my society (and several others) a food chain, I might be the spider. (Ironic, since I am petrified of them.)

I might be the one who had a few being “below” and a few “above”. I am not in the worst position, but I am not in the best. I assist others, but I also need assistance. I live in this middle space, clinging to a rung halfway up the ladder. And it gives me, I believe, an interesting perspective. I can relate to those with more and those with less. I can relate with the “haves” and I can relate with the “have nots”. But there are days that I cannot relate with either—or I don’t want to.

There are days when I want to leave this underserved, loud, dirty, potentially dangerous area. I get tired of the noise—the sirens, the yelling, the gunfire. I get tired of the long commute to anything and everything. I get tired of not fitting in or looking right or getting stopped by the cops because of my white skin. I get tired of being followed by dudes yelling “damn” at my ass. I get tired of trying to explain away how or why I live here without outing myself as poor. And I get tired of all the other people who seize stereotypes and make assumptions about this place I am tired of being in, because despite its faults, this is my home, and there is much beauty and strength in this place.

There are days when I want to be a person with greater means. There are times that I feel jealous of the friends with cars and homes and second homes. There are times I want the “American Dream”.

There are more days, however, when I want to scream at the people who have all of this, and to tell them what selfish, self-serving, privileged bullshit they participate in, without even knowing. I get tired of people who are wealthy pretending they are poor. I get tired of people whining about the inconveniences of their gigantic remodel. I get tired of people saying they are broke and then going out to dinner every night. I get tired of being associated with this type of upper-middle class person just because I am white and educated. I get tired of people assuming that I belong with the “them” while I feel like an “us”.

Frankly, it is exhausting to be in this middle space, between two worlds, because I feel like I must constantly critique and defend one to the other. I want everyone in my neighborhood to know that there are some generous and kind, rich, white people. I want everyone who would not desire to set foot in my neighborhood to know that it is filled with intelligent, hard-working, kind people. I need to constantly justify all the things to all the people.

And then there is the added stress of my own situation needing to be constantly justified. I need money. I need help. I need time. I need energy. I need surgery. I need to make it sound acceptable to have all of these needs, or people refuse to take seriously or meet those needs.

The middle is an impossible place to live. You can almost touch the better things, but if you reach up you risk falling back down into a worse space. So you stay, clinging to the little that you have. Hustling and hoping. Wanting more but not able to live through less. Clinging to the place where you have barely enough to survive.

If that sounds depressing, it is.

There are no questions as to why my antidepressant medication dose keeps increasing. This rung is a depressing one. This middle of the food chain feels like a constant threat, but also like a huge blessing. I’m not at my worst. But I am also not at my best.

And here we arrive at the statement “ignorance is bliss”. Because if I didn’t know the best, or the worst, I wouldn’t feel trapped in this middle, fearful of losing my grip and too paralyzed to attempt upward mobility. The people around me hope with an unyielding strength I have never seen before. They keep believing in the more, in the higher rungs, and in a new and better day. I know that the new and better day is not what it appears to be. I know that there is just a dollar or two between rungs. I know that there is prejudice at the top that keeps those with enough dollars to move up tumbling back down. I know that there is abundance and that it isn’t being offered to the people on the lower rungs. I know that if the people above would just share, the whole fucking ladder could turn on its side, leaving us with equity, and even footing, and no need to compete at the climbing. I know that those people don’t share unless it is in their self-interest, and their dollars come with strings attached. I know because I am in the middle. I know because I am the spider. I know because I have one foot in poverty and one foot in opportunity.

The proverbial food chain allows for ignorance at the bottom and ignorance at the top. But the middle is the space filled with knowledge—frustrating, hope-stealing, anger inducing, devastating knowledge.

I know poverty and possibility. And I am not better off for it. I am tortured by it.

The wealth of the top is achieved upon the backs of the ones at the bottom. We are the macrocosm of the microcosmic activity in my window sill. We consume one and escape the other.

And I can’t stop thinking that this is wrong. I can’t stop thinking that humanity should be behaving with a more evolved and more educated system than the insects. I can’t stop feeling that we are very far from what we were intended to be, and that the ladder and the food chain and the striving and the inequity are all distractions from where our attention ought to be placed. I can’t stop believing that we should be placing our attention and energy on justice—on ending the ladder.

There is this line spoken by Daenerys Targaryen, a character in J.R.R. Martin’s Song of Ice and Fire Series, that mimics the sentiment that I often put forth. After the many powerful houses of the era are named and called spokes on a wheel, she says with great conviction, “I’m not going to stop the wheel, I’m going to break the wheel.”

In saying this, she expresses that she will not simply be the newest in the line of leaders that overtake the current system. She is, instead, going to destroy that system. She is going to make a new way of being possible by taking apart the system of injustice currently in place.

I’m going to break the wheel. I’m going to break the ladder.

I’m going to create a new system, and not allow the once unjust and oppressive way of being to survive. I’m not going to tolerate the present and hope for a better future, but I am going to smash through the present to create a new present.

What if we stopped being a glorified food chain and broke the ladder? What if we let go of the ideas of “earned” and “deserved” things and status? What would Daenerys do today?

WWDD: What Would Dany Do?

How do we break the wheel in our own society? How do I stop being the spider and consuming the fly? How do I keep the creepy bugs from chasing me? How do we create a system that doesn’t look like the unevolved and inhumane clamoring for power and money and resources, and instead looks like cooperative and compassionate co-existence?

I’m tired of being in the middle, but I am more tired of the idea of the middle. I’m tired of caste systems and hierarchies and patriarchy and all the other systems of oppression and power that make us predators or make us lunch, depending on the situation.

It is time to function on a higher plane. It is time to break the wheel. It is time to end this system and find a new one. It is time for human beings to step outside of the food chain, and use our enlightenment for good and not for evil.

Documents and documenting are serious themes in the past few weeks to months. It is interesting to me the ways that we are forced or encouraged or inspired to document, and all the different reasons that are used to justify or explain that documentation.

I recently had to make a trip to my local office of the Chicago Housing Authority. I had used their new online participant portal to upload requests for a rent renegotiation due to household income changes in both August and February. In August, they denied my claim, saying I had not attached documents proving my claim—but I literally uploaded them per the instruction of the site, and had copies and receipts of all the attached information. Last week, they claimed that I had never made a request in February, and that my mailed documents of proof (which I had mailed to avoid the same result I was met with in August) went to the wrong address (the address listed on their form and web page, by the way). So, they claimed there was no proof that I ever applied for a renegotiation.

Not true. I had documents and receipts a plenty this time. There was no way I was letting the lack of documents be my downfall this time around.

So, I went into that office with an entire folder full of documents. I brought documents proving I applied with proper documentation in August and was denied. I brought documents proving I applied again in February, and supporting documentation that I deserved the rent adjustment at that time as well. And, for good measure, I brought in documents removing my daughter from my household over a week before she moves into her own apartment. All of those documents were copied and admitted and dealt with by the office manager at the office, and then she said, “Now, the only thing we are missing is two documents signed by your daughter and we can get all of this processed.”

Gaaaahhhhh!!!!

I called my daughter and asked if she would head down to the office after work to sign these added documents. They closed at 5, and she made it there at 4:45, signed the documents, and in the next 30 days, my mailbox will receive documents that tell me whether or not I am allowed the revision in rent, whether or not they will back-date to the dates of application, whether or not I will receive a refund of the monies I overpaid due to these errors on the part of the housing authority, and a document that tells me to come into the office again and sign about 45 other documents so that they can give me documents to take to my landlord, so that he can accept my voucher sans dependent child document and let me keep living in the same home I am currently living in.

If you thought being poor was tied to laziness, you are an idiot. I fill out as much paperwork as any doctor or lawyer I know. I just don’t get paid for filling it out—unless you count rental assistance and food stamps as getting paid, which I don’t, because safe housing and food security are basic human rights. (A fact that most developed countries have embraced and created systems of care to ensure. But not the United States, because we are selfish, entitled brats who believe we somehow earned our privileges—in other words, ignorant assholes.)

And if you thought you heard the word “documentation” enough for a lifetime in my earlier paragraphs, then prepare to be disappointed!

There are all sorts of other forms of documentation that are tied to my disability case. The disability system is such that you are denied the first time. Almost everyone not in a wheelchair, nursing facility, or mental ward is denied. That is just the way it works (inefficiently and expensively). You acquire documents from all of your doctors, you fill out numerous assessments, you add in assessments filled out by those who know you or live with you, and then you wait for documents that say you are denied. After the denial documents, you go find a lawyer, and they make you sign about 87 documents because you must sign disclosure statements for every lawyer who might work on your case, not just the law firm, according to the state, effectively requiring the disabled person to sign the same document 4, 5, or 6 times, depending on the number of lawyers in their particular firm. Then you wait for the exact same assessments to arrive and be filled out another time, and collect the same medical records, but your lawyer asks you to keep them informed of any changes in treatment or diagnosis and to document your wellness or lack thereof, so you give all the paperwork you did last time, plus you begin logging your daily mood, daily function, daily tasks, and any and all changes that happen, to support your case when your redetermination is denied, and then you have to file paperwork requesting a hearing, and get back a document that says you will be given a court date in about 10 to 12 months. Then you document changes and function and symptoms and such for a year, while you wait to bring all the information amassed in the past three years before a judge. Who, if we have done all the things correctly, will create a legal document stating that I am, in fact, disabled.

It isn’t difficult to understand, at this point in the post, why I hate documents. I am so overwhelmed with paper that I sometimes feel it is drowning me, and paper cuts are just par for the course in my situation. If I don’t have any, I worry that I must have missed some paperwork that needs filling out or filing.

But yesterday I was introduced to a new form of documentation.

Yesterday, two friends came over to help me create a video for my fundraising page. And we started by documenting things. One suggested things that we could document, and the other started slowly, but surely, taking video and still footage of all the things. We started with adaptive tools—the things I need on the daily to live life: special knives and peelers and openers for the kitchen, a tool to tie buttons and pull zippers, various adaptive pens and pencils and cutters (because I can’t use scissors without severe pain and injury), and more. Then we moved on to the overflowing basket of medications and the daily pill organizers that are filled with multiple doses of many of those medications. We also printed a copy of my next two weeks of appointments, which required three pages of paper. And we looked up the list of current illnesses, which wasn’t complete since not all of the things are recorded in the same place, but still took almost an entire page. Next was physical therapy and occupational therapy papers that show what exercises I am to be doing daily. We spread them out over the floor, and as I was preparing them I dropped papers that scattered all across the living room. My friends filmed as I sat and worked to collect and organize this pile of documents once more, and caught on camera the fact that I cannot see some of my therapists due to insurance refusals, documenting that my medical needs are sometimes not met because of money. And by that time we were all exhausted and decided that we would need another meeting to document all of the ways that my illnesses affect my life—maybe two.

But this documentation, this mini-documentary of my daily life, being made by the son of two documentarians and his fiancé, was eye-opening and expressive of things that I hadn’t imagined. My life is really difficult. And there are all sorts of proofs of it.

However, the thing that was most shocking to me was that I am doing all these things. I am doing my exercises and using my splints and walking in water to get some cardio and eating 1100 calories and none of them sugar and filing all the papers and bringing in all the documents and taking all the medicines and attending four and five medical appointments each week and stretching and meditating and coloring mandalas and doing art therapy and studying nutrition and gardening and using my paraffin bath and doing yoga and writing and more. I am doing far more than anyone might imagine, because I am doing far more than I could have imagined.

When I look at all the things that make up my life, and I am drowning in the sea of papers, and exhausted or craving chocolate or in pain, and feel insignificant and incapable, I rarely look at the proofs of all that I am doing. I look at all the documents that show I am not “good enough”–poor and sick and lacking. I don’t look at the documentation that shows me doing every possible thing I can do to be the most well I can be. I get dragged down by the negative proofs and don’t even consider that there are positive proofs.

While some might not understand the life of the chronically ill person, and will refuse to believe the proofs laid out in my mini-documentary, I know that I am doing so much hard work to live my best possible life. Whether that means I walked the dog, or I ate vegetables, or I colored for a bit, or I remembered to connect with my breath, relax my face and neck, and engage my core when feeling fearful or overwhelmed on a stressful transit ride, or I washed the dishes, or I asked for help, or I practiced new body mechanics, or I managed to finish an article or blog post, I am doing everything that I can do to live well.

My previous ideas of living well were not good ideas of living well, in many ways. And when my focus shifted from living out my pain in ways that brought more pain to creating a life that included education and progress and sufficiency and stability, I thought that meant I was on the path to living well. And I believed that documents like my resume and my degrees and my personal and professional references were the ones that would bring me other good documents, like the deed to a house and paystubs that showed more than three digits before that decimal point and an insurance card that I could bring to the orthodontist to receive services.

But I had it wrong. None of those documents are proof of living well. I know plenty of people with bigger incomes and better insurance coverage who are not living well, but are full of contempt and hatred and negativity. I know plenty of people with lots of letters behind their name from years of education who are completely ignorant on important points. I know plenty of people who are physically and financially well, but complain every time I see them about one thing or another in their life, refusing to see anything that has good or peace or acceptance or joy at its core and only seeing the negative. None of those people are living well.

Documenting my life started as a project to garner support from others, by offering proofs of my need. And, I suppose, that is still one of the goals of the project. But, it has become much more than that for me. It has become a proof of the fullness of my life, and the extent of my dedication and strength, as I work day after day after day to live a life of wellness—improving my body and healing my mind in any way possible. This video will be something that shows others what dealing with constant physical and mental suffering is about, and give them a glimpse of why my financial need is great at this time, and demonstrating why I am incapable of working enough to support myself and depend upon the generosity of others. But, for me, this video is the catalyst I needed to find self-compassion and to stop denying my tenacious work toward a life well-lived, but accept and proclaim and honor the fact that I am a warrior.

I am not weak, but stronger than almost anyone I know. I am not lazy, but offer my body the rest it needs to heal and cope and survive. I am not stupid, but suffer cognitive impairments due to my illness. I am not reclusive, but work to foster and put energy toward only the best of relationships with the best and most supportive people in my life. I am not crazy, but deal with multiple mental illnesses that affect my thinking and choices. I am not playing the victim, but am coping with the ways that I was truly and deeply victimized by all manner of perpetrators. I am not scared, but am learning to manage hypervigilance and overstimulation and anxiety caused by my diseases. I am not giving up, but am fighting for every moment of every day to create the best possible life I can live with my challenges. I am not begging, but I am placing my need before my community in the hope and the trust that provision will be offered in return. I am not desperate, but I am allowing myself to be vulnerable and open and honest in expressing my struggles. I am not whining, but I am telling the truth about the realities of chronic illness—and if you think that telling my truth is whining, note every time you complain about a thing, and see which of us expresses more complaint per actual struggle (I’ll bet on you, unless you are dying or also have chronic illness). I am not lying, exaggerating, or making things up, but I am telling the harshest of realities without any sugar-coating to make it more palatable or acceptable to others.

And I know that it isn’t very palatable or acceptable to discuss any sort of true suffering in our society. I know that we generally avoid pain, and we lie about who we are and how we are doing on a very regular basis, and we chastise or castigate or cast out any who express in their words or actions or being any hint of the lies we are telling or the avoidance we are seeking. It is the reason we don’t make eye contact with the pan-handling person on the corner, or look down on the addict or the sex worker, or pretend that we “earned” our privileges and not that we are taking part in a system of injustice that is harming others and refusing helps for those in need.

I wonder, though, if it is possible to truly live well when we can’t look in the eyes of the homeless, or see the addict and the sex worker as our equal, and admit that we have privileges and seek to create a more just system that offers basic human rights to all people. And I move toward an answer of “no”. The more I identify with the least and the lowest of the society, and the more I hear people’s judgment and lies and excuses to reject my illness or my need or my deserving assistance, the more I believe that I am living well, and those others are living sad and sorry lives.

I know that I am living well. I am putting every ounce of energy into being stronger, more able, less dependent, more mobile, calmer, more balanced, thinner, more educated, more aware, and just better than I was yesterday, and I am doing it in a way that doesn’t deny my experience, but embraces the reality with which I am faced and by which I am surrounded. I am doing it without shame and with honesty and vulnerability. And I am doing it in ways that recognize my privilege and stand against systemic injustices. I am living well, and am proud to be doing so.

So, I am no longer afraid of or weighed down by documentation. I’m learning to embrace the documents in my experience as proofs of transformation and hard work and betterment. I’m learning to see every piece of paper as a document that shares life and fights disease and seeks equity and justice, even when those papers are also annoyingly redundant and seem ridiculous. And I am also recognizing that every word I write here, and every thank you note sent, and every photo with friends and family and my dog, and every selfie of a new haircut, and every update or post or page that is put out by me or on my behalf or with me tagged is also documentation, and it is documenting a most beautiful life.

Bring on the paperwork, world.

Paper cuts or no, I am ready to keep on documenting and to keep on being the best and the most I am able to be. And no matter how many diagnoses come my way, and no matter how many treatments and therapies are added to my daily routine, I am going to keep on adding documents that show a life of wellness—maybe not in my body, and maybe not in my psychology, but definitely in my spirit.

I will live life well and share a record that screams of legacy and not of lack.

Last night a dear friend came over and we planted veggies and herbs in pots that will live in my front room/office/art studio. (Yes, it is getting crowded up in here.) At least I hope they will live! I’ve already got a great rosemary plant, a struggling mint plant, and some wheat grass that has been growing long, grassy tendrils toward the window sill, while the half away from the sill dies. Once the grass gets uncontrollably long, I cut some off and feed it to the dog. Its purpose is solely to aid the dog’s digestion. (The juicer hasn’t made it out for use in months. It takes too much energy to clean the thing.)

We dug in the dirt and planted seeds and navigated the challenges of filling large pots without using up all the potting mix, and we talked and laughed and repeatedly chastised the dog for eating dirt. It was quite lovely.

And later that night, the whole house smelled of wet earth. And it made me long for a place to call home, where I could dig up the actual earth, on the surface of the Earth, and dig my toes into that cool, dark dirt. Something about gardening grounds you. It ties you to this crazy ball of fire and rock and sediment that is flying around in the solar system, and it leads you to the knowledge that health and wellness and beauty and good come out of that sweet, musty, damp, dirty soil.

I remember thinking last night that it smelled like earth, like home, like life.

There are a lot of people in this world who don’t have the pure joy of the experience of gardening—of growing what sustains them and offers them beauty. There are many more who burden under the sun and the weight of bushels of produce to offer food to the world, while they are left with little for themselves. And then there are some farmers who grow inedible crops with vats of chemicals and strip the earth of its beauty and its life-giving nutrients, but who believe that they are those feeding the world in a noble way. My favorite are the farmers who have recognized that way of stripping the earth is not good, and who have taken the time and the effort to create organic farms that offer a rich variety of healthy fruits, vegetables, and grains that heal bodies and sustain life and the planet.

No matter how you view food and farming, there is no doubt that food, and access to it, either fuels life or takes it from us.

This past month, I have been living on what we might call a skeleton crew of body fuels. Because I am disabled and currently do not have income, I rely on the SNAP program for paying grocery costs. But, for some reason, the office which hands out or refuses to offer these food benefits was “behind”, and they had (without informing me in any way) received an extension on deciding my annual re-certification of benefits. I am usually allotted just over $300 to feed a household of 2, and that benefit arrived every 4th day of the month, in the form of automatic payment to a little plastic card in my wallet. As you might imagine, $300 for two is usually spent in full by or before the 4th rolls around again. So, when the state decided it needed six weeks to put my information into the computer system, instead of the 15 days that is customary, I was left with two weeks of no funds for food. And you might think this is some strange isolated incident that happened only to me, but all sorts of families, many with babies or young children, were alongside me in the delayed food boat. Can you imagine not being able to feed your 3-year-old, because the state is “behind” and got an extension?

I can imagine that. There were times when my daughter was young that there just wasn’t enough in the food account, and I chose to go without eating so that she could. After all, she was developing a tiny little body and brain that needed nutrients. My parts were fully developed. There was also a time or two where I was brought to tears because I had chosen food for myself over experiences for my daughter. She missed her 1st grade field trip because I needed the only $5 in my account for lunch between college classes the day before. I had forgotten to pack a lunch, and had classes from 8 a.m. to 8 p.m. that day. I needed to eat. So, I bought a sandwich with that last $5, and I cried in my car in the school’s parking lot as I ate. (It is a challenge to sob while eating, by the way.) I knew that my hunger had just deprived my daughter of an experience that every other 1st grader would have. She sat in the corner of another classroom reading and doing word puzzles for the entire day, while her class went away without her. She cried for some time after school. I cried myself to sleep that night.

Food security is one of the most affecting issues in the country. Millions of people are on programs like SNAP and WIC that assist them in purchasing healthful foods. Millions more utilize food pantries, where you often get less healthful foods, like canned corn and pasta and boxed meals. The nearest grocery store to my home is over a mile away. And without a car, I must take two buses or a train and a bus to get to the store, and then must be able to carry what I purchase back home on my shoulders. I usually opt for the market that is four miles away, but requires only one bus ride and walking a half block to the bus and to the house, so I don’t collapse from the weight of my milk and beans and greens on the way home (usually). I live in what is considered a “food desert”. Where I can access very expensive, unhealthful foods with ease at corner stores or gas stations, but I cannot access fresh fruits, vegetables, dairy, and meats at a traditional grocery store. And there are many more like me.

I used to marvel at the homes of friends that had a second refrigerator and multiple freezers in different parts of the house. They were all stacked to overflowing with pizzas and casseroles and meats and ice cream. Everything you could possibly want to eat was there for the taking … and they would stare at the food and say, “there is nothing to eat”. That was never our family’s situation. We gardened, so we did have a deep freezer and a row of jars in the basement after canning season, but those spaces were filled with the surplus of the garden, and not with the mounds of convenience foods and beverages that friends had at their disposal. I remember my mom would make BLT’s for dinner and the bacon was rationed in such a way that we could have one sandwich, with 3 slices bacon, or we could choose two sandwiches and 1.5 slices bacon per sandwich. I used to think my mom was stingy or strange in the way that she would micromanage food consumption. As I got older, and had to navigate the world on my own, with hunger and budgets and social services and need becoming real for me, I realized my mom was just trying to make scarce resources into enough. She just wanted to feed us all month, so she rationed our bacon, and fed us SPAM, and allowed us pizza once or twice a month.

I can’t imagine, and wouldn’t have understood, times without food in a family with five mouths to feed. I can imagine times without food—or have actually experienced them. And I think upon my childhood limits and the limits I have set for myself these past two weeks without grocery funds, and it is painful to have knowledge of how messed up our food system is in this country, and how the majority of farm land houses no food for people, but food for cows and seeds for more food that doesn’t feed people. Vegetables and fruits are considered “specialty crops” and are not subsidized by the farm bill the way that seed corn and soybeans are subsidized. Farmers are rewarded (and paid handsomely) for growing what I cannot eat. So there are piles of rotting corn in some places in the U.S., while I have been eating cucumbers and bananas every day, because they are the most affordable fresh items at the store right now.

At times, I see advertisements about farmers and how they are feeding America. And I usually make a strange chuckle that expresses disbelief and the ludicrous nature of that claim. My tomatoes are from Mexico, and my bananas from an unknown tropical area. None of the food that comes to my table can claim to proudly be grown in Iowa, where I grew up and where farmers are revered (the ones that grow the useless corn, not the specialty vegetable crops). What they can claim is that they are feeding cows, but on $300 a month, we almost never eat beef or pork. They can also claim to be supporting ethanol, but I haven’t a car, and ethanol costs more and more the farther you get from the Iowa fields.

So, this is a long post about food, I guess. But it is also about the earth. And I feel like that love of the smell of the damp earth, and the desire to have my bare toes deep in black soil says something about both food and earth.

I think we are meant to grow things.

Sometimes people argue against my friends who have chosen not to have children by saying that god told Adam and Eve to populate the earth. But what if that is a slight mistranslation of intent. What if the meaning behind that command was more like, “I’m not going to let you live in this lush garden that I created for you anymore, but you need to go out and grow life on the planet yourselves.” Maybe it was the bird kicking the babies out of the nest, so to speak. Maybe it was a command to go out and till the soil and water the plants and nourish the vegetables and fruits and create a garden of their own. And if that is the case, then the piles of rotting seed corn, and the hog confinements, and the stripping of and polluting of the soil are all against the will of god.

Now, I’m not strictly religious at this point in my life, but I do believe in a divine presence, and I do believe that the earth, the soil, the water, the wind, the sun, and all that grows and is sustained because of them, are divine gifts. Divine gifts that somehow arose from primordial ooze after an explosion of stardust, but gifts, nonetheless. And right now, we are starving millions. This cannot be what the gift was meant for. This cannot be the way we are supposed to utilize the beauty and nourishment and life that these gifts offer.

Today I received my SNAP benefits for March. They are two weeks late, but I can make the long trek to a market and obtain fruits and vegetables and eggs and whole wheat bread and all the things that I have been longing for in my diet the last couple of weeks. I can stop worrying about hunger and the empty feeling in my gut when I peer into the nearly empty fridge. I can stop subsisting on cucumbers, and actually have some avocado and beets and pineapple and maybe even some goat cheese if I budget really well. And I want to rejoice, and I will rejoice, at this end to my deep need for nourishment.

But I can’t help but wonder, at what point the state might, once again, endanger my life by taking away my access to healthful foods, or comprehensive medical care, or safe housing, or whatever else I need to survive as a single, disabled adult in America.

So, the smell of earth in my front room/office/art studio is not just a memory and a hope of toes in dirt at a home that is more permanent and more mine than what I have been offered the past several years, but it is a reminder that sustenance and stability are not mine. And planting herbs and vegetables is the first step to sustaining life, and perhaps the only step I can take at this time. Because I lack agency. Because I am poor. Because I am not respected as a human being equal to all the other, non-poor human beings. Because people consider poverty to be indicative of stupidity or moral depravity, and not indicative of systemic injustice and a society that discriminates against people of color, the disabled, women, singles, people without children, people with too many children, LGBTQIA+ people, Muslim people, people emigrating to the U.S., the elderly, the young, and a host of others.

And I wonder, will we ever get to a place where we are all working together to sustain a giant garden flying around in the solar system, with peace and compassion and abundance being the standard that we hold most dear and present to all? Or, will we stay in a place where one individual has an extra fridge full of soda and beer and surplus food, and one is dependent on the state’s timetable for survival and is forbidden from purchasing beer or soda?

The sun is currently pouring in the windows, heating my skin and boosting my vitamin D, and offering life to my little seeds pressed into the dirt. The smell of earth is still heavy and inviting and beautiful. I imagine the abundance that could grow from these tiny pots. I imagine a life that holds on to abundance, and isn’t plagued by a cycle of need/enough/need/enough/need. I imagine a “someday” that holds a little home of my own with a garden where I can sink my toes into the damp, darkness and feel tied to the earth. Grounded in the land of enough. Grounded in my spirit and in my life, because the stress and the worry of living in a constant state of lack, and never having enough resources, is gone. Grounded in ways that let me speak to the divine in gratitude more often than in need. Tied to the earth. Tied to a community. Tied to life, instead of the fear of death.

I am scheduled for a mammogram later today. I’ve spent about the last 2 hours debating with myself about whether I do or do not wish to reschedule that appointment.

I can make it.

But I don’t want to worry about it.

But I feel well enough.

No, I don’t feel well.

But I could push through it.

But my head hurts already, and I think I may be getting sick.

But maybe if I just wait a bit I will feel better.

Except I need to hop in the shower and wash off all of the lotions and deodorants and such from yesterday.

I don’t have the energy for that.

Right. You don’t.

Okay, I will reschedule.

But it takes forever to get in again, and I have surgery coming up in a few weeks, and then I won’t be able to get out and do it.

This isn’t an event that has great significance. I get a mammogram every year, and the past several years of having them done, plus multiple ultrasounds and an MRI, have left my doctors with some confidence that the abnormal mass in my left breast is not cancer. So, it isn’t like I NEED to be there today.

But I feel like I am always cancelling things.

It is true. It is really hard to know your boundaries with fibromyalgia. My body used to tell me in real-time what it needed. Now it can take hours, days, and even weeks for my body to express that I have overdone it, and that my muscles and joints and brain function are not going to cooperate with my plans for the day, or the week, or the rest of my life.

This disease cancels life. Not just the annoying little appointments that we all feel like putting off, but the good and beautiful things too. Time with friends, celebrating with family, going to events … they are all cancelled.

Recently I created a wish list on Amazon of things that I would love to have to make my life easier and to keep me functioning at a higher capacity. Even those needs had to be cancelled, because life throws curve balls and supports I usually depend on were removed, and my financial situation is dire. I’ve had to ask people to support my fundraiser instead and to offer money to pay the bills and keep me alive.

It isn’t really a bad thing to shift focus in that manner. Obviously, I consider basic needs of tantamount importance, and I am more than grateful for anything and everything that is offered me.

But I feel like even my expectations for living have been cancelled.

And I mean living is the expectation, not that I expected to live with certain comforts. I am afraid my life might be cancelled.

This is probably difficult for people to grasp. And I don’t blame anyone for not understanding the depth of my suffering in this moment, or the challenges that I face, or the need that I experience. I would not have been able to grasp any of that until the last few years happened, and disease became my life, in some sense.

And cancelling became the way I approach life.

I was watching a video of Brene Brown discussing trust the other day. I only got through half of it because I needed to get on the bus and get to yet another appointment (one I couldn’t easily reschedule). But one of the key components of trust that she talks about in the video is reliability. She posits that reliability is doing what you say “over and over and over”.

I am not reliable.

I say that I will do a thing, and then the thing is cancelled, or rescheduled, or abandoned because I cannot do it. My body and my mind won’t let me do it, so it isn’t always my fault, or demonstrative of my personal character, that I cannot follow through on what I say I will do, but the fact remains—I cannot be reliable in the way Brene Brown suggests I must be to be trustworthy.

When I started to exhibit symptoms of fibromyalgia, I had no idea that I was exhibiting symptoms of fibromyalgia. This is common. It takes five to seven years on average for people with this disease to be properly diagnosed. And because of that it is often difficult to even determine onset. But when I look back several years, and when I talk with my daughter about our history together, I realize that I was already cancelling life as early as 2007. She would ask to go to the pool, and I would say we can do that tomorrow. But when tomorrow arrived I would claim that I didn’t feel well, or that I was too tired, and we wouldn’t swim. She still resents me for cancelling all of those times. She understands now that I was in the earliest stages of my illness at that time, and that I didn’t mean to be unreliable and to become someone whose word she could not trust, but she remembers the way that she felt let down all of those times, and all the excuses I made for not following through. And that pains me, just as my physical body pains me—or maybe sometimes more.

I still cancel, and with much more frequency than I did in previous years. My disease progressed as it went undiagnosed and untreated for those years. It got worse when I moved to the Midwest from Arizona, and suddenly climate changes, lack of access to healthful organic foods, and less swimming were affecting my body without me being fully cognizant of the effects of these changes. And by the time people were taking my pain and fatigue seriously, I was on the sofa for a year and a half.

I’ve fought my way back in many ways, and I spend far less time on the sofa at this point. But the reason that I do much better at living with my illness is that I am better at setting boundaries and better and listening and anticipating my body’s reactions. Even though it doesn’t tell me in real-time that it is suffering, I can plan more effectively to make certain that I don’t overwhelm myself. Proactive scheduling, approaching life in terms of my own needs instead of the expectations of others, and being more aware of my illness and the ways it presents and affects me have helped me cancel less … in part because I try to do less.

But I still cancel. Over and over and over, I cancel.

It is difficult not to apologize for cancelling. It is difficult to accept it as a symptom of my illness and not as a mark of poor character. It is hard to feel like I can be a good person, a good friend, a good partner, or a good mother when I cannot commit to things fully and cannot be reliable.

And I wish that there was some positive spin that I could add to the end of this post—some nugget of wisdom that brings us full circle and expresses the self-awareness and growth and determination that I so love to share.

There isn’t.

This is one thing I have not yet figured out. I still don’t have a beautiful lesson from this experience. If there is a lesson at all, it might be that I am not defined by my symptoms, but that isn’t the way I feel.

Last night I was crying to my dad, as I was telling him about crying to my dear friend Luke the night before, and saying how upsetting it was to look back on my life, and to have knowledge of all the things I have overcome and all the ways I have survived, and to think now that my own body and the illness that plagues it is that which I am unable to overcome, and the thing I may not survive. I know, in the logical sense, that my body is not killing me, but what I feel is that I won’t survive because of myself.

There isn’t a way to fight against yourself and win.

There may be a way to fight against your disease and win, but that is much easier when you are fighting a cancer, which you kill in order to save yourself, than it is when the thing that you are fighting is incorporated into your entire being. My own synapses, my own cells, are hurting me. I don’t have the luxury of separating out what harms me and what IS me. They are one.

My disease becomes my life. Hurting is my life. Confusion is my life. Cancelling is my life.

There isn’t a way around that fact. There is only acceptance of that fact. Or at least that is the way I currently view things. And I would love to view them differently, but I don’t know how.

I might still go and have my mammogram today. I might not. But either way I will continue to struggle with myself over my boundaries and my unreliability and my inability to be as I wish I were—living without constantly thinking about breaking and ruining life. Living without always considering dying. Living without worrying that I won’t make it beyond this state, or that this is how it always will be. Living without cancelling so much of my life. Living with the constant challenge of seeking to accept life as it is while simultaneously wanting to improve upon my life.

I know it is a constant process, and I know that it will always be such, and I may never arrive at a destination in which I sit and feel like I have completely accepted myself and my way of being in the world. And I think it is like that for everyone, the healthy and the sick alike. But today, in this moment, all that seems to matter is that I have, once again, fought with myself over the desire to cancel and not cancel.

I suppose that is how I must approach this fight—moment by moment. And I suppose that I will eventually start to recognize both the challenge of making it through an event and the cancelling of an event as good and helpful and right. Because each time I power through, and each time I cancel to rest, I am making a decision to do the best that I can for myself. And as long as I keep focusing on that—on what is best for my care and for my survival—I am likely choosing well. Even if my choice makes me appear unreliable.

And, at the end of this post, I have made a decision. I will reschedule my appointment and deal with the mammogram another day. Today, my spirit, and my body, and my aching legs and head all need me to rest and to care for myself by cancelling. Today, cancelling is care. Today, cancelling is good. And, at the very least, I can always claim that I am caring for myself over and over and over.